Carter's all "fixed" up

Carter went into surgery at 8:40 this morning. (we got up at 5:00 a.m. so we could get here at 6:30). The doctor came back at 10:25 and said everything went well. He'll have a couple incisions that were superglued together and some stitches that will dissolve on their own. All boy parts are where they are supposed to be now along with his circumcision.

No baths for a couple of days and lots of Vaseline and he is good to go. He always seems to go through these things like a trooper.

The experience for us was nearly identical to his heart surgery. Same place to check in, same place to meet the docs and the anesthesiologist and the same long hallway to hand off our son, their patient, to the OR. We waited in the same waiting room, waiting for the same nurses at the nurses station to call Carter's name. Kristi went back to the PACU (post anesthesia care unit) until he fully wakes up and then I'll be able to join the group.

Meanwhile, Parker is off tubing at Camp Tracy and Ashleigh is playing with Grandma at Grandma's house. What a day!

Thank you for your love, prayers and support. What a ride we are having...

Surgery is a go

Well surgery is a go for tomorrow - yeah - we made it without Carter getting sick!! We passed the pre-op questions this time and we are all set for tomorrow. We got the early surgery so we have to be at the hospital at 6:30 a.m. The good news is that we will be done earlier as well. Please pray that all goes smoothly and we are back home tomorrow night!!

And for some cute pictures...have you ever wondered what your head would look like if you had it in a cast? Ashleigh got some good pictures as Carter's head was being cast for his helmet - kind of funny.

And then I just added a few other pictures that are just so cute I had to post them. Carter had a great Christmas as well as Parker and Ashleigh. Santa brought Carter the Baby Signing Time collection so we are now starting to watch those and learn sign language. Carter likes the music already - he smiles while they are singing. The picture of the two baby Santa's are Carter with his new cousin Tanner. They were so cute together.

Hope everyone had a great Christmas holiday!

Good news...not so good news

Well we have had some good news and not so good news. We went to the Ophthamologist on Monday for an exam. He said Carter's eyes look good. He does not have the shifty eyes that are common in children with down syndrome, he doesn't have cataracts and he doesn't need glasses - so that is all good. The only thing they are going to watch are his tear ducts. They are small because his nasal bridge isn't as big so his eyes are often watery and he gets goobers in his eyes in the mornings. Dr. Larson thinks that by the time he is one it will have corrected itself...if not they can fix it. Otherwise he will see us in a year for another check up.

We went to the speech therapist on Thursday and boy was she surprised!! She was proud of his accomplishments at getting the NG tube removed and being able to eat everything by mouth. We are supposed to work on eating more solid baby foods and more volume of milk. She will see him again in February because he is doing so well!

We had his second round of synagis for RSV today and he did well....he didn't like the shot but he wasn't mad for long. They did weigh him and before they did I mentioned that he had been sick. Good thing I did because he was at 17 pounds and now he is only 15 pounds 12 ounces. She mentioned this to the pediatrician because it was such a significant weight loss that it needed to be addressed. The pediatrician said it was probably all due to the illness (croup and the upset stomach) but we have got to work on getting him back up in weight. I will have to start fortifying his milk again to make him get more calories.

And for the bad news...today was supposed to be surgery day....but it was canceled. They called yesterday and we did all the medical history got the time for the surgery and everything was all set. Then they called back and said they had talked to the anesthesiologist and because Carter received steroids when he had the croup three weeks ago he said the surgery was a no go. We have to wait four weeks before he can go under anesthesia. By the time I found this out last night I couldn't call the urology department so I called early this morning. December was full for surgeries because of the holidays but I begged to please have it done this year so it would fall under this insurance. Carter would have been number 8 on the wait list for cancellations of surgeries which is basically not good. I asked if there was any possibility to get him in before December 31 and she said she did have one opening on December 30 with a different doctor but it was absolutely the only surgery time they had left for the entire month. I said we would take it and we got in. Now we just have to keep Carter well for 18 days so we don't get canceled again. So pray that we will make it through the holiday season without any sicknesses - I don't want to have this canceled again.

The only other bad news is that the helmet people called and said that our insurance will not cover the cost of the helmet. They consider it to be cosmetic and not medically necessary. So now we get to pay for it ourselves....would anyone like to guess how much that is? I wish it was about the cost of a regular football helmet but it is much, much more. Merry Christmas Alan, Kristi and Carter. Maybe when Carter is done using the helmet we can hang it on the wall and watch TV on it because we could have bought a couple of very nice big screen TV's for the price....

Well that is about all for this week...it's been busy but then again every week is busy. Maybe one day life will slow down....

Oh where oh where has the time gone?

Hey Mindy this post is for you and your girls (an update with a few pictures)

Things have definitely been busy around here. Carter averages about 4 appointments a week and it is keeping me hopping. We are trying to fit in as much medical stuff as we can before December 31 as our out of pocket maximum has obviously been met for the year and will start over on January 1. I think we can pretty much plan on paying our out of pocket maximum for Carter each year....something to look forward to I am sure. So much has happened and we haven't had a lot of time to catch everyone up to speed so here goes...this will probably be a novel (fair warning).

1. A trip to the urologist in November proved very interesting. Carter has never been circumcised - not because we didn't want him to - the opportunity never presented itself. They will not do this procedure in NICU (that was the first month), they won't do it at PCMC unless the baby is going to be having surgery and they can do it as a second procedure to an already scheduled surgery (no surgeries planned the second month of life so no such luck there). The pediatrician will do it in his office if the baby is less than one month old (so much for that - he didn't get out of the hospital until he was two months old). A urologist won't do the procedure until the baby is six months old because he would have to be sedated - Carter didn't meet that requirement yet. The urologist would do it as a second surgery to an already scheduled surgery - except of course heart surgery - because it is too risky - well there goes that plan. And he won't do it until six weeks after a heart surgery - so here we are at 8 months old and the poor kid still isn't circumcised. We did make it into the urologist and we have scheduled his surgery for December 12. It is now a surgery because upon examination it was discovered that one of his testes did not descend and will now require surgery to correct this problem - but the good news is he can now be circumcised as a second procedure to this surgery!!!! We are not looking forward to the surgery - but once again it is something that needs to be done and we will just deal with it. The surgery will take 1 1/2 hours and then we have been told recovery will be about 4 hours and then we can come home. Let's hope that is the case!!

2. Carter had his first synagis shot to protect him from RSV. He did just fine - but that is a massive shot - not just a little poke and you are done - there is a lot of medicine so it is a pretty long shot. We will continue to get this shot every 28 days until RSV season is over in April.

3. CARTER CAN EAT!!! BY MOUTH!!! I think this is absolutely the most amazing and miraculous news we have!! Carter passed the swallow test in October. On November 10 we went to the speech therapist again and she gave us a goal. I will put this in perspective to you because then you will know how miraculous this is. When we went to the speech therapist I had been able to get Carter to drink 50 mL by bottle two times (roughly 1 1/2 ounces) which is not much but certainly more than what was going in before. She told Carter that the 3 month goal was:

Drink 180 mL of milk by bottle per day (roughly 6 ounces)
Eat 1 Tablespoon of baby food by mouth per day

I thought yeah right 180 mL is going to be hard to get him to do and that is when she told me that was the three month goal. Well, that is all Carter needed to hear becuase the very next day he started drinking more and more. On November 15 (NOTE THAT IS ONLY FIVE DAYS LATER) he surprised us all and drank 220 mL of milk in one day!! The next day it was 190 mL and was eating baby food. We were floored - I called the speech therapist and she was so surprised. On Wednesday November 19 we pulled out his feeding tube and he began eating everything by mouth (800 mL a day). That is nothing short of a miracle. We are so proud of our little man and so thankful to have one less tube. I can never explain in words what it feels like to feed your baby a bottle after wondering for so long if I would ever have the opportunity to feed my baby like normal. He has done awesome except for one small setback...which leads us to...

4. A short hospital stay. Carter was just fine and then Friday morning (November 21) at 1:30 a.m. he woke up crying. This is weird in and of itself because he does not wake up in the middle of the night. His breathing was very high pitched and his oxygen saturations dropped into the 60's (not good). This is very unusual for him because he never drops his sats. After watching him for just a couple of minutes we knew we were going to be going to the hospital. He was struggling to breathe and he had the high pitched stridor breathing. I packed him up and we drove up to PCMC and arrived at 2:15 a.m. They quickly got us in the emergency room and determined that he had a bad case of croup. So they administered steroids to open his airways and admitted us up to the third floor. His pediatrician came up at 8:00 a.m. to check him out and said that we would have to stay at least one more night because croup gets worse and night and he needed to be observed another night. So after juggling Ashleigh, Alan and Parker, Carter and I settled into our room and tried to get some sleep. He did really well and behaved Friday night so the pediatrician released us Saturday morning. I can tell already that this is going to be a very long winter...

5. We came home from the hospital on Saturday and on Sunday Carter started vomiting. Another little set back that turned into a huge set back. With each vomiting episode he was losing his milk and it wasn't pleasant for him (obviously). And remember we had just gotten to the point where we were feeding him a bottle - but all of a sudden eating was associated with vomiting and therefore he decided to have nothing to do with bottles of any kind. So much for all that hard work - we were back to square one. In goes the NG tube again....On Monday night every single one of us got the stomach flu - boy that was fun. Maybe years from now I can look back and laugh but not so much right now. We all recovered quickly except for Carter who was still having issues. One week later he was still having issues and it was getting old. Come to find out, some medicine I had been taking was making him sick - oops!! Well now we have remedied that problem and we are slowly and surely getting back on track. We have pulled his NG tube out again and he is eating everything by mouth again (as of yesterday).

6. Carter can roll over!! He has done it - he is so smart and has figured this one out. He goes from his back to his tummy and looks so pleased to view the world from another perspective. He does this so often now that whenever I put him on his back he always ends up on his tummy.

7. Carter is getting a helmet. Yep, the inevitable is happening. We knew from the very beginning that Carter preferred his right side and we worked and worked and worked to get him to turn left - but no. After all he has been through he decided that he wanted to have a helmet too. His head had flattened enough on the right side that a short look from a craniofacial surgeon sealed the fate of the helmet. We go tomorrow to get his head fitted for one and it should be ready in about two weeks. Yea - Merry Christmas to Carter!! He will most likely have to wear the helmet for 3 months. Maybe by the time he is one we can have all tubes and helmets off his head! The only positive thing about getting a helmet is that we will be able to tape the oxygen tube to his helmet and we won't have to worry about his skin being taped up so much. OK so we are stretching to see the positives about something that doesn't seem so positive. In the long run it will be worth a helmet to have a nicely shaped head.

Well I think that is all for now. That has been our life in a nutshell the last few weeks. Now if we can only find time for Christmas shopping amongst all the doctors appointments, surgery, physical therapies and speech therapies we will be doing awesome!!

Hope you all had a wonderful Thanksgiving!

Carter passed!!

Hooray for Carter - he passed his second swallow study! We went to Primary Children's today and had his swallow study. He did awesome (except he really didn't want to drink the Barium - but who can blame him for that) and he does not have any aspiration issues. We are so excited. We have another appointment with the speech therapist on November 10 so I am sure that she will be excited. Hopefully we can really push hard with teaching him how to drink from a bottle so that we can get rid of this NG tube. We would really just love to lose any tubes - oxygen or NG tube.

We also got word from our insurance company that Carter is now "pre-approved" to receive the Synagis shots (RSV). We will start on November 13 and have shots every 28 days. That will be fun. The nurse that gives the shots said that the kids start screaming as soon as they see her because they are in the office every 28 days and they remember what she did to them last time. We are just grateful that this is an option for our Carter. Right now he is coming down with a small cough - we hope it goes away soon.

Thanks again for all your love and support!
Kristi and Alan

Doctor's Appointment

It's been a while again. Honestly we just hang out here at home and there isn't a whole lot to report on Carter.

We went and had Carter's six month check up at the pediatrician the other day. He weighed in at 16 pounds 13 ounces - he is getting to be a very big boy!! He is also 25 3/4 inches long. The doctor said he looks great and he is impressed by how much weight he is gaining. We have lowered his calories down to 24 (he was at 27) and they have increased his volume to 750 mL per day. We also are adding 100 mL of water each day to give him extra liquid but not more calories.

We have a swallow study scheduled for October 21 up at PCMC. This is an interesting test in which they give Carter a bottle and watch by x-ray to see if he can protect his lungs from getting fluid into them. We know he is not aspirating where we can tell - but there is a possibility that he could be silently aspirating and that is what they want to check. If there is no evidence of silent aspiration then we are good to start really pushing the bottle thing with the speech therapist. If he is silently aspirating then the next step would be to insert a G-tube directly into his stomach and that is how he would be fed. This would help immensely because he couldn't pull out a G-tube like he can his NG feeding tube. We just hope and pray we don't have to go down the G-tube route - but of course we will do whatever is in the best interest of Carter.

Carter will be getting shots this season to prevent him from getting RSV. Evidently they are very expensive shots so our doctors office has sent the paperwork to our insurance to get him "pre-approved." Once we receive the approval we will set up a schedule as he will have to receive a shot every 28 days. Thank goodness this is available otherwise we probably wouldn't be leaving our house at all this winter. Our doctor said we are now good to take Carter places. Yeah for us!! We have ventured out to the store a couple of times - it is nice to be able to run errands again during the day. Of course there will be instances this winter when it will be in the best interest not to take Carter places - but we will just weigh out each situation.

On a funnier note, our DDI Early Intervention therapist Marsha told us we needed to buy a bumbo for Carter. This seat would help him learn to hold his head up better and strengthen his muscles in his core. Boy he loves his bumbo (see picture). He can't sit in it for long periods of time, but he is definitely strengthening his neck muscles. Doesn't he look cute? Of course we are prejudiced and we think he is the cutest. Way to go Carter - you are getting to be a big strong boy!!

Happy 6 Month Birthday Carter!

Happy Six Month Birthday Carter! It has been a six month wonderful journey. You are so special and we can't imagine life without you in it. You have made us laugh, cry, and pulled our family together. You have taught people what it means to love. You are a little slice of heaven right here on earth and we love you more and more each day. You are a strong boy who is going to accomplish many great things in this life! The world may not view you as a perfect person, but you are perfect for our family. You are meant to be in our family, you chose us and we chose you. I am honored to be your Mom and I know Dad is grateful to be your Dad. Your brother and sister love you more than anything and there is a special bond between you. You have taught us that families are forever no matter what happens. You have taught me so much more about motherhood. Motherhood is not just about providing for our children. It is the comfort of a touch when I ache to hold you in my arms. It is listening to your cues when something is not right and you can't tell me what it is. It is loving someone so much that I wish I could spare you from your pain. You have given us a gift of showing us how to slow down and enjoy the journey. Each day we have here on earth is a gift. You have shown us how to be strong and be valiant servants. You have drawn us closer to our Father in Heaven and taught us the importance of relying on Him to help us through very difficult trials. You are a perfect spirit in a broken body who came to this world to teach people. Your love radiates to those around you and we are drawn to you. We will always be here for you!

I put together a slide show with pictures from the first six months of his life. Make sure you have your computer speakers on because there is an awesome song that depicts how we have felt these last few months. The song is called "He's my Son" by Mark Schultz. I heard this song on the radio just after Carter was born and I was in tears by the time the song ended. I knew that one day I would put Carter's pictures together with this song and a six month birthday seemed like a great time to do that. Enjoy seeing a little bit of what he has been through - it has been a lot! Here is hoping that the next six months will be better than the first!!

Thank you all once again for your support during this incredibly difficult time. We have been sustained and strengthened by family and good friends. We are indeed blessed!
Love,
Kristi and Alan

Speech Therapy

It has been a busy week. I really felt this last week that I needed to get Carter into a speech therapist to help him with eating. I called and got this arranged with the pediatrician who referred me to the Primary Children's Medical Center outpatient rehab center conveniently located not far from our house. After leaving a message on the rehab center's message center about getting an appointment I sat back and waited for a return phone call.

The next morning they called and said they had a cancellation and could I come in the next day - Wednesday morning. The appointment happened to be the perfect time as Ashleigh was in preschool and Parker was in school. I was so excited and told them yes in a hurry. I was then told that sometimes it takes up to a month to get in to see a speech therapist. I felt so blessed that this worked out for us in this way! Heavenly Father does indeed watch over us and bless us when we are in need of help.

Carter and I headed to the outpatient rehab center and met with Helene Taylor. She is so awesome. She was floored at Carter's size considering he is a "heart baby." She watched him try and eat from a bottle and was very encouraging. She gave me some pointers and some exercises to do with his cheeks to help him get a better grip on the bottle and he is doing awesome. She is going to send us up to Primary Children's to do another swallow study because a newborns mouth changes between birth and six months. She just wants to make doubly sure that he is not silently aspirating before we go through all this therapy. The encouraging news is that she thinks he will be able to get the hang of it with a lot of practice and patience and that means we can eventually get rid of the feeding tube. Yeah!!

She told me to get in touch with Carter's dietician to see if we need to cut his calories down even more because he is getting so big. Ideally he should weigh 20 pounds at 1 year of age and with him being 6 months old and 16 pounds - we will probably surpass the 20 pounds before 1 year. I haven't ever been concerned about my babies being chubby (because chubby babies are so dang cute) but evidently this will play into his mobility because of his low muscle tone. If he gets too big it will be harder for him to hit milestones - so I guess he can join millions of other people (including myself) and start watching his weight - ha!ha!ha! That just sounds so funny.

On a different note - many of you know that we belong to a support group called Intermountain Healing Hearts. This is a support group for families dealing with heart issues in their children. The members who belong to this very special group have so much knowledge and understanding. They have been so welcoming to us and we feel we have found several people who understand what it is like to have a baby undergo open heart surgery, spend months in the hospital, deal with oxygen, feeding tubes and all sorts of issues that most people do not understand. It is so nice to have people who can offer advice, help us through rough times and rejoice with us in happy times.

One of the sweet heart babies, Brooklyn Bailey, passed away into the loving arms of Heavenly Father on Saturday. Her death has made our family think about how lucky we truly are to have Carter with us still. She was a valiant angel who fought hard to stay with her family, but in the end it was not the Lord's will that she remain here on earth. She has returned to heaven after 2 months on this earth and is now perfect and will be waiting for her family to join her. Even though I have not personally met the family, I feel like a death has occurred in a very close friend. Brooklyn was kitty corner from Carter in the PICU, but I didn't have a chance to meet her family. Please pray for the Bailey family as they go through this very hard trial.

We have also watched two other babies go through the miraculous journey of receiving a heart transplant. They are both home now and doing well. We are truly blessed to live in this time and age when so many things are possible. There are miracles happening everyday.

When I think back on the last six months, I can't imagine my life any different. It has been a wonderful journey filled with tears, joys and feelings that cannot be put into words. Heavenly Father knows each one of us and is mindful of our situations. I am a different person than who I was six months ago. I will never be the same. Our family will never be the same. Carter has been a miracle from the beginning and continues to amaze us everyday. We can't imagine life without him. We are truly blessed.

Thank you for your support and prayers!
Kristi and Alan

Post Op Follow-up Visit

We had Carter's post op follow up visit with the Cardiologist and the Cardiothoracic Nurse Practitioner on Wednesday morning. Everything looks good as far as the healing and scar goes. They were a little concerned about his weight - but I think there is a mistake in their charts so I am not that concerned. They said he left the hospital at the same weight he had weighed in at that day. However, I know we left the hospital with him weighing 15 pounds and he is now at 16 pounds 1 ounce - so I feel that is great progress for 2 weeks.

Dr Tristani (the Cardiologist that was doing post op work) said that his heart on the chest x-ray is already smaller than when he left the hospital. That means his heart is not having to work so hard so that is excellent news. He also said there was a difference in his lungs and that everything is starting to clear up with regards to his lungs. We were hoping that they would say we could be done with oxygen - but unfortunately that was the one piece of bad news we received. They said he would have to be on oxygen until we came back to see the cardiologist in FOUR MONTHS! Darn - we were so hoping that we were almost done with dragging around oxygen.

He told us to do half doses of Lasix (the diuretic) on Wednesday, Thursday and Friday and then discontinue the Lasix all together on Saturday. The only two medications he has left is for reflux and he told us to check with our pediatrician because he doesn't seem to have reflux issues since the surgery. I called the pediatrician today and he said go ahead and stop the medications to see what he does. We can always start them back up if it doesn't work - so as of tomorrow we are done with medicines!! Yeah for Carter!!

We are still working with his feeds. I would LOVE, LOVE, LOVE to get rid of the NG tube and feed him with a bottle - but he still struggles with the bottle. I have asked the pediatrician if maybe I could get a referral to a speech therapist who could give me some ideas of how to work with him to get him to eat better so we will see what the doctor says.

All in all it was a great report and we are excited to be on the road to recovery. We are truly blessed to live in a time when so many medical advances have been made. Thank you as always for your love and kindness and for the many prayers being offered!

Love,
Kristi and Alan

Look how far we have come

I just realized that it has been a long while since we posted last. So sorry!! Carter has been home now for 2 weeks. We are back into a routine - although a slightly different routine because Carter really can't go anywhere and risk getting sick. So we just hang out at home and try and make it outside for a daily walk around the block. I stocked up on projects to do while we were trapped in our house and so far nothing has gotten done - oh well - it is much more fun to just hold and love Carter.

Carter is doing so well we can hardly believe it. So far (I'm knocking on wood right now) he has not had a single reflux episode since the surgery. He is still receiving medicine to help with reflux but so far it has been really good. This is so good because the reflux issue was awful and I felt so bad every time he went through an episode. I never realized before how bad reflux can get - I now have so much more empathy for families who are dealing with this issue!! It is NOT FUN!!

Carter has finally remembered how to laugh and smile really big. He lost that for a while after surgery - but it is definitely back and so cute!! Alan can get him to really laugh when he tickles his neck - we will have to try and catch that on video and post it. He has definitely got his personality back.

And with that he has also remembered how to pull out his tubes - darn. We have resorted to having him wear the newborn mittens so we can try and keep the tubes in. When we have to replace the tube after he pulls it out - it is not pleasant because it makes him cough and that makes him cry. Coughing and sneezing are about the only things that are still painful for him as he is still recovering.

His steri strips fell off on Saturday so I am posting a picture of his scar. He is currently on three medications - two for relux and one diuretic for a total of seven doses a day. This is a far cry from where we were with eight medicines and about 20 doses a day prior to surgery.

Another thing we have been working on is feeding him. I decided that with the reflux issue seemingly under control that I would mess with his feeds a little bit. I figured if he wasn't throwing up that maybe his stomach could hold a little more food. So I tried it and it has worked. I now feed him 105 mL every three hours by sending it through a syringe into his tube. With this we also give him a bottle - but that isn't working so much. He will drink about 1/2 ounce and then he is done - that is obviously not enough to sustain him so in the tube the rest goes. We really would love to have him learn to eat with his mouth - but this will probably take a lot of time, practice and patience.

We have an appointment with the Cardiothoracic Surgery Nurse Practitioner and the Cardiologist on Wednesday. We will post an update when we have one.

Again thank you for all your prayers on behalf of our family and Carter. We are truly blessed to have so much support!
Love,
Kristi and Alan

We're Home!...What?

Well, we can't believe it either but we are home...with Carter. He has done so well at recovery we didn't expect it this soon either.

Carter has a sedated echo late morning and was home about 2:30 this afternoon. We hooked him back up to food and he is tolerating it well. He has had no reflux issues since we took him into the hospital and may be that his med cocktail has gone from 8 pre-surgery to just 4-post surgery.

He continues with Prevacid, Lasix and Erythromycin from pre-surgery days and we've added temporary Loritab for pain. Gone are Digoxin, Sodium Choride, Diuril, R-Gene, and Aldactone. Maybe it was the cocktail that created the reflux. We don't know but this is a much easier med list.

Anyway, it is late and we are quite tired and calling it a day. We feel so blessed to have each of you as friends...for your prayers and thoughts. We love Carter very much along with Parker and Ashleigh.

More to come...

Love,
Alan & Kristi

August 31 Update

Carter is doing quite well. His cardiologist team (3 cardio docs) came in this morning. Carter is planned for a sedated echo tomorrow morning with a possible discharge Monday afternoon or sometime Tuesday.

His biggest physical change is his breathing rate is about half what it was prior to surgery. This morning he seems to be like regular Carter. He sucks his right wrists, he chatted and cooed and had his eyes wide open. It is amazing how fast these babies can recover from such drastic surgery.

Carter is chugging right along to almost his pre-surgery personality except for the rapid breathing which is gone. I hope you enjoy his picture after his bandages were removed. Last night his nurses were Chloe and Stephene and this morning he has Amy and Jackie. Jackie is from the Infant Unit and is filling in today. Carter's nurses have been great, especially Judy in the PICU.

Love,
Alan & Kristi

Carter's Personality

Things are slowly getting back to normal. His feeds are back to 35 ml/hour since he figured out that he can use his diaper. :)

I should tell a story as Carter was preparing to leave the PICU yesterday. Kristi got to his room about 9:00 a.m. and Carter was not happy. He was arching his back, crying and his heart rate was just above 200, which is too high. Kristi came in and put her hand under his head and consoled him and he calmed down rather quickly. His heart rate got back down around 140 within 30-45 minutes which was good.

Our family has discovered some of Carter's personalities. One, he doesn't like blankets, sheets or anything over his legs. He sleeps in a onesie. The nurses try to cover his legs and he kicks the blanket off.

He also favors the right side of his head and will likely get a plastic helmet to "round out" his round head. We, the PTs and the nursing staff have tried many tricks to get his head to be centered or to lay on his left side but he wriggles his way to his back and places his head on the right side every time.

One other one is that he doesn't like tubes in his face (who would?) so he leverages his fingers and hands to get his feeding tube and canula off his face (as we've shown in earlier posts). The nurses have his tubes taped pretty well to prevent against eager fingers and in the PICU his hands were gently restrained from going to his face. he could move them towards his tummy or sides but they were prevented from finding his face (and tubes.)

I'm sure there are more as we find them.

Kristi mentioned that today they likely will pull out his chest drain and Pacer wires. The chest drain simply evacuates excess liquid under his heart. The Pacer wires are connected to his heart so that if he develops an irregular heartbeat, they can get it back in sync. His heart has neen extremely stable since the surgery except for the small firing issue from a couple posts ago.

He is awake sometimes and is on Loritab for pain. The morphiene is no longer used on him since he left PICU. They will transition him over to Tylenol for pain in the next 24-36 hours.

It is amazing how fast he is recovering.

Thank you for your thought and prayers on Carter's behalf. We truly appreciate them and your friendship.

Love,
Alan & Kristi

Carter on the Move

Ok, things always change in the Hospital. He has moved out of PICU! Carter has moved to the Children's Surgical Unit in room 3080. That darn kid just wants to come home so he's trying to mend as quickly as he can. It seems to be obvious that he is not the fondest of hospitals.

But we love Primary Children's Medical Center anyway...even if Carter has second thoughts about that.

Love,
Alan & Kristi

Overnight

Carter did really well overnight. A couple things they are watching is that his heart is now firing from the center instead of from the top to the bottom. Usually this has an affect on his blood pressure but his BP is good. They are going to do a 12-point EKG this morning and see exactly how the heart is firing. This is correctable with medicine. (He was on the med just after surgery, he may need to be on it a little longer.)

Also, his feeds are at 17 ml/hr and they are on hold there because his girth has increased about 1cm. They hear bowel sounds but without saying it, they'd like to...change his diaper. We told them to be prepared because he likes to save up over time. :)

Everything else is moving along fine and we'll have another report later today. Kristi is going up this morning and I'll go up in the afternoon. We took Parker up to see him last night and we'll take Ashleigh this morning.

Thanks for all the comments, thoughts and prayers.

Love,
Alan & Kristi

PICU - first 24 hours

Well, today was very exciting and eventful. Kristi and I decided to put our name in the 'lottery' for a parents room in the hospital. (It's not really a lottery, its based on distance and how critical the patient is.) We were able to secure one so we spent last night in the hospital. The twin bed was a bit tight for the two of us but we slept so well from the lack of sleep the night before we didn't care. The picture on the bottom is with the ventilator tube in his mouth, he would suck on it like a binky. The top picture is from today after the tube was removed.

Carter is doing so well, they took him off the ventilator about 10:40 this morning. They also removed his catheter and started his NG feeds again. (He was hungry!) He is still on morphiene for pain management but will move him to Loritab and then to Tylenol within a couple days. He is on oxygen still through a canula until his pulmonary hypertension is gone and then he should be canula free! Yee haw!

They started feeding him milk about 6:00 tonight and are starting out at 5ml/hour (down from his usual 35ml/hour) and increase it by 4ml/hour until they are back at 35ml/hour. Of course, this means his NG tube is back and he wants to grab it so his hands are still tied down a little bit. He can move them side to side but can get up to his face....hmmm that sounds like a home remedy to tube pulling...in addition to his mittens...

There was also talk tonight of transferring him out of PICU to the Telemetry Unit (telemetry is to watch his heart rate and rhythm) tomorrow or Saturday.

In other words, Carter is doing just fine and moving along well. We anticipate him coming home early next week.

Thanks to all who offered prayers, fasting and thoughts for Carter and our family. We are stronger because of each of you.

Love,
Alan & Kristi

Whew!

Ok, We made it through today after 20 hours, a catnap and some visits with the nurse. His nurse tonight is Judy and she is wonderful. Carter is currently in PICU Room 8 at the end of the hall. We'll see if we are able to load up some fresh pictures. If any of Carter's heart friends are in the PICU, stop in as we'd like to meet you. We'll also see if we can find any of you that are in PICU.

Carter is currently on a ventilator and some pain meds. He has two tubes in his body for drainage and his heart is wired for any emergency heart arrythmia that might occur. They'll pull those before he goes home and suture them up. He also has pretty heavy load of diurects to get fluids out of his system. They are also treating him for pulmonary hypertension so he'll come back home on oxygen but its days will be numbered as his lungs get back up to speed now that the lungs aren't dealing with screwy bloodflow from his heart.

Of course, what would Carter be without being...Carter. He still fights the nurse to keep his head on his right side. He slid down his crib mattress so they made a nest for him and they safety pinned his hands to the mattress because he tries to grab his ventilator hose...this would be bad. Anyway, they retaped his ventilator tube and Carter sucks on the tube like a pacifier so it is doing good for him anyway.

He is resting confortable and tomorrow brings a new day. He opens his eyes every once in a while and we rubs his hands and feet when we can. It's great to have this part of him fixed.

We'll update more tomorrow. Have a great night.

Love,
Alan & Kristi

Update - Hour 4 - Surgery Complete

We just met with Dr. Phillip Burch, Carter's surgeon. All went as well as expected. He ligated the PDA, sutured the ASD and placed a patch over the VSD. He even gave us the leftover piece of fabric from his VSD. Due to Trisomy 21 (a.k.a. Down Syndrome), they discovered his Aortic arch goes to the right instead of the left like other people. The concern was that the arch going to the right can put pressure on the trachea but he didn't see evidence of that.

Carter's heart is running well but he'll be on a ventilator for at least a day, maybe two. He'll be on a bit of diuretics to get the excess fluid from his system and then we'll move forward. There were no leaks on the echo done on Carter after surgery.

We'll get to see him about 2:00 to 2:15 and post at least one more entry today.

Sorry if this seems rambling. Just estatic that we are done and can start the recovery.

Love,
Alan & Kristi

Update - Hour 3

Carter is off the Heart-Lung bypass machine (which means his heart was restarted) and the VSD, PDA and ASD have been repaired. The nurse figures there is about an hour left of surgery (done between 1:30 and 2:00) and then we can see Carter in the PICU about an hour after that. Everything has gone very well. There were no other apparent defects (i.e. no AV canal and the valves seem good)

Carter's surgeon should be with us about an hour from now and we'll visit with him and post a report.

Thanks for your love, prayers and support,
Alan & Kristi

Update - Hour 2

The nurse just came to speak to us and the surgeon's are wrapping up the VSD which was the biggest hole. Apparently they closed the PDA first and they've spent the time working on the VSD. Once it is finished, they will work on his ASD. The next report should have more info regarding a possible AV canal defect/valve defect but nothing was said by the nurse with this first report.

Next visit about 12:30...

Anxiously waiting,
Alan & Kristi

Update - Hour 1

They started Carter's operation at 10:30 a.m. and we should have an update from the Nurse Practitioner about each hour. Unless there are any surprises, this means he'll get sewn up about 2:30 and we should be able to see him in Post-op around 3:30 or 4:00.

He'll have lots of tubes coming out of his little body so we'll try to take a picture or two.

Carter has two surgeons, two scrub techs, two nurses, the anethecist(?) and one other so a total of 8 people in surgery.

More details to come as we get them.

Love,
Alan & Kristi

He is in Surgery now

It was an early morning for us - we got up at 4:30 a.m. and got to the hospital at 6:30 this morning. After all the registration stuff we got to meet with the surgeon. They actually changed the surgeon to Dr. Burch. He explained the procedure to us and mentioned that there might be another small problem with his AV Canal - but it is not something they can see clearly on the echo he had done Monday. He said they would repair the ASD first and then look at the AV Canal to see if needs to be fixed. He went in to surgery at 8:15 a.m. and we began the long process of waiting. Surgery is expected to take 3-4 hours after they have gotten everything set up and ready to go which will take about 1 to 1 1/2 hours. We are just here waiting for any update. We will keep adding updates as we receive them.

Thanks again for your love and support.
Kristi and Alan

Tube pulling - a new Olympic Event maybe??

Oh, what do we do when Mom is not looking?

We pull our tubes out. This past couple of weeks has been really fun for tube pulling. Carter is really good at getting his nasal canula out of his nose. If you hold him up to your shoulder he rubs his nose back and forth until it comes out. At night he can wiggle out of it just by moving his head back and forth and back and forth. And the NG tube is even better. There have been a few days that I have had to place the tube back it three times!! The little turkey!! He usually gives us great big smiles when we ask him who pulled out his tube. These pictures prove it - I caught him red-handed!!

I thought I would add this post as a lighter note to what we are anticipating tomorrow. My heart and head is torn two different directions. My head says that we need to do this surgery - my heart does not want to hand him over to the surgeons. This is going to be one of the hardest days of my life. Yesterday as we spent 10 hours in the same day surgery room waiting for our 12 hour stay to end - I spent hours and hours holding and cuddling and talking to Carter. He is so sweet and so interactive. It is hard to believe that a body that looks so perfect is not perfect on the inside. I wish I could do this surgery for him so he won't have to go through this very difficult week. I wish I could take away the pain I know he is going to have - but I can't. All I can do is be there for him and help him get through this. We were strengthened before when he was in the hospital and I know we will be strengthened again. It is the many prayers that are being offered on behalf of our family that is making the difference. Thank you, thank you, thank you!

We plan on updating this blog tomorrow as we get updates while Carter is in surgery. Please keep him in your prayers as well as the surgeons who will be working on him. Carter has done all he can do with getting bigger, stronger and older - now it is the surgeons time to fix him.

Kristi and Alan

Get ready...Get set...

Today was Carter pre-op workup. We spent 12 hours at the hospital today which is a story by itself. Carter had an X-ray, echocardiogram, blood work and EKG. Everything is a go for Wednesday morning.

They sedated him for the echo since he can be a little wiggly and they wanted good pictures. The echo was done on an ultrasound machine and they looked at almost every angle and position of his heart, including blood flow, valves, holes, heartbeat and many other things in his heart. His heart is still a little large but they are not concerned with it.

Due to his premature birth, the hospital requires a minimum of a 12-hour stay for any outpatient procedure where sedation is used. Hence, Kristi and Carter is spending several hours playing with each other and Kristi holding Carter and watching TV until midnight when they can leave.

Dr. Kouretas is his surgeon and we're anxiously anticipating the surgery but have reservations and anxiety anyway. It will be hard to hand Carter over to the surgery staff as we pace the waiting room. But, the repair will mean a better quality of life for Carter. Here is his surgeon's bio: http://www.pedcardiology.utah.edu/team/doctors/surgeons/Kouretas.html

This will be an exciting week as we return to the Hospital, we'll keep you all posted.

Thank you for your prayers, thoughts and support. It is very appreciated.

Love,
Alan & Kristi

4 Month Check Up

Alan is teaching me how to do this whole blog thing - so let's see how this goes. . . .

This is a picture of cordless Carter. Every couple of weeks we have to change all the tubes and he is "cordless" for a few brief moments. He looks totally different without tubes - we can't wait until he is like this all the time!!!! He doesn't seem to like being cordless - I bet it feels weird - he has always had cords!

Carter had his 4 month well baby check up on Friday and all is well. He weighed in at 14 pounds 2 ounces which puts him in the 22nd percentile. He is currently 23 1/2 inches long - which is only the 2nd percentile - ok so he is definitely short!!

He didn't get any immunizations because he has heart surgery scheduled in 3 weeks. They said that the heart lung bypass machine actually filters the blood so well that the immunizations he would have received would be filtered right out of his blood and then we would have had to do them again. So we will do his 4 month shots at 6 months and his 6 month shots at 9 months and then we should be caught back up.

Carter has recently found his hands - wow what a nifty toy! All was well and we were excited for him to see his hands until he started pulling his tubes out. He now is constantly pulling out his nasal canula and today he even managed to pull out his NG tube - no small feet considering how much tape is on his cheek. We may have to resort to the newborn mittens to get him to stop. During the day its OK because we can watch him and put his canula back in when he pulls it out. However, at night it is not so much fun. After his canula has been out for a period of time, his oxygen drops, his pulse oximeter starts to beep and someone has to get up and go put it back in. Makes sleeping very difficult!!

Up until this time, I haven't said much about this whole journey - but I want to let people know how incredible this whole experience has been. It was a very difficult pregnancy with a very shocking surprise at the end. We had no idea that Carter would have Down Syndrome. I thought that when I finally had the baby I could get back to normal - but that was not to be. Life may never be normal for us again - actually it will be normal but it will be a new normal.

We know beyond any shadow of a doubt that Carter was meant for our family. He is a little piece of heaven right here in our home. He is a miracle baby and we are excited to be his parents. I have always thought children with Down Syndrome were the cutest kids and often wondered in the back of my mind if I would ever have a child with Down Syndrome. I think that I was being prepared for this experience. As Alan and I look back on things that have happened - it is very clear that many things we were going through were preparing us for this very special experience. This is an incredible journey that we have embarked on - we have no idea what lies in store for us - but we know that we are not alone. We have been strengthened and sustained by a loving Heavenly Father who has heard our prayers and the prayers of many family members and friends. Carter is a fighter and he is strong and he is just the cutest kid ever!

Please keep him in your prayers as we approach August 27 - we are going to need as many prayers as we can get!

Thanks so much for your support!
Kristi and Alan

Heart surgery is a go!

Kristi and Carter went to the cardiologist last week and he was cleared for surgery. Yesterday afternoon we got the date set. Carter will have his surgery on August 27th. The time will be forthcoming and shared with family.

We will go to the hospital on the 25th for all of his pre-op work and blood tests. We should have more information shortly.

Carter is starting to smile and can get his right hand to his mouth. He can't get his thumb out and into his mouth but he tries. Kristi and Parker have been able to get him to giggle too. The early intervention specialist is really impressed with Carter's muscle tone. We feel blessed that she has a down syndrome child and has provided much needed comfort and input to us on what she sees in Carter and his abilities.

Thank you for all your prayers and support. They have been answered.

Love,
Alan & Kristi

July 10th - Cardiology

We found a website for Carter's Cardiologist. He is Dr. Puchalski and his info is located at http://www.pedcardiology.utah.edu/team/doctors/cardiologists/Puchalski.html. We feel fortunate to have him as well as Cardiologist Fellow Wilson King.

We visit Dr. Puchalski on Monday for a status report and update on Carter and we hope we are all looking for a surgery date depending on how everything goes. We hope to ask Dr. Hawkins to perform Carter's surgery so we'll see how that goes. His bio and info are at http://www.pedcardiology.utah.edu/team/doctors/surgeons/index.html

You can also check out Utah Healing Hearts at http://www.intermountainhealinghearts.org/

Thanks for all of your love and support. We are grateful for our family, neighbors and friends for all they have done for us. We can't say thank you enough.

Love,
Alan & Kristi and kids.

July 4th Post - Just an update

Happy July 4th!!

Carter is now 13 weeks and 4 days old and we're moving closer to surgery. He wakes up at 6:00 most mornings and is figuring out that those rare times he cries, someone comes to him. So now he seems to cry more since people attend to him.

We meet again with the cardiologist in less than 2 weeks and we hope we can set a date for Carter's heart surgery. The surgery will repair his ASD, VSD and his yet unclosed PDA valve. We think that surgery will occur sometime in August.

We've established a sort of routine when we give his morning meds, bathe, fill his feeding bag, check his oxygen tanks and get ready for the day. He naps often throughout the day as he continues to work hard breathing because of his heart issues.

He is a treat when he is awake as he gaggles and grunts to communicate (what else would an infant say?). He also has been able to breast feed without gagging which is quite a feat when you have reflux but he seems to manage okay.

Thank you for all you love, support and prayers. We are truly appreciative of all everyone is doing to support our little family.

Love,
Alan & Kristi

June 16 - Cardio report

Hello everyone,

I can't believe it's been a week since our last post. Of course, we've been busy. I finished my Master's program and Kristi has been learning medical stuff and could probably pass off as a nurse!

Carter had his appointment with his cardiologist today and things are moving well. We won't see the cardiologist until July 14th now. Also, we are able to up his feeds from 25 to 27ml/hour which also means one of his meds increases from 6.25 to 7.5ml per dose. Sadly, it is the one he hates and makes him gag. Lucky us!

He seems to be doing well and the cardiologists seemed to think we're good to wait for a month as long as we continue to see his pediatrician. If something comes up, they'll begin scheduling for heart surgery. We do have to have a blood test on Wednesday to see how his 7.5ml dose is affecting his kidney outputs. (side effect of the diuretic) It looks like as long as Carter is doing well, heart surgery will delay so maybe August/September at this point. It's ok to move the date for now but we'd also like to get it done but everything is happening for a reason so we'll be patient.

We're still meeting his pediatrician fairly regularly for the time being and see where we end up.

That's all for now.

Love,
Alan & Kristi

June 8 Post and pics

Wow! I can't believe it's been a week since I posted. Thursday is my last day of school so it has been a busy week. I've attached a few pictures from the past 10 days or so when Carter was able to come home.

We had him blessed in church today so he wore a nice white outfit and looked very handsome.

As far as where we are at, we have an appointment tomorrow for some blood work to see if we need to adjust him meds and feeding. We meet with the pediatrician again on Friday and the Cardiology team next Monday. The goal is still to get closer to heart surgery which is likely towards the end of July or August. I don't believe we'll get into September at this point.

I hope you enjoy a few more pictures...

Thank you for all your prayers and support. The church family has been wonderful and our neighbors and friends are the best!

Love,
Alan & Kristi

June 1 - 2 months and a day

Hello everyone,

I'll get to pictures a little later in the month. School is just two classes in two weeks away from being done for Dad and three days for Parker.

We had a great welcome home on Thursday from family and friends and neighbors. THANK YOU!! It was wonderful to come home as a complete family.

Carter met his regular pediatrician on Friday and received all 5 of his 2-month shots. He was concerned until the 4th shot when he started crying, which he doesn't do too often.

Carter is at home and doing quite well. It seems he is awake more and we tote him around the house with an oxygen tank and his food pump pushing milk through his NG tube. We got his meds loaded into a chart we made in Excel. This came from an idea we were led to called www.MedActionPlan.com. This site allows a user to enter a list of medications, their frequency and dosage and to print a variety of reports to make sure you don't miss a dose. And the best part is its free.

Carter had a blood test yesterday and will again tomorrow where he has another blood test and we visit the PCMC cardiology dept. We visit Carter's regular pediatrician on Friday for a followup.

I will get pictures loaded shortly and you can see him around the house, family and friends.

Love,
Alan & Kristi

May 29th - We're Home!

Well, we made it. Carter is finally home and sleeping in his crib. We've made some adjustments to handle his many attachments such as his feeding pump, and oxygen and we're monitoring his oxygen levels for a couple of nights to see how he does.

We'll make some changes to the blog for Carter's next journey, Journey to surgery.

Love,
Alan & Kristi

May 28 - Day 58 Good News Day

Hello everyone,

We'll it seems we have the go ahead to bring Carter home tomorrow! Yeah!!! Parker and Ashleigh are excited and I think it is safe to say that Mom and Dad are excited.

It's hard to believe that Carter is almost 2 months old and will finally get to be with his mom, dad, brother and sister.

We still have heart surgery to look forward too and that will occur sometime this summer. We want Carter to be bigger, heavier and older and he seems to be doing good on all of them. He has getting older down pat as he still gets older every 24 hours :)

He'll come home on oxygen and under continuous feeding with a NG tube to his tummy. We'll see how it goes. We also need to have his "head higher than his bum" (another medical term) to keep his reflux in check. So tomorrow is to get everything arranged with the home health people for oxygen tanks, food pumps, and a wedge for under his crib mattress. The only thing missing is the 24 hour nursing which mom and dad will pick up! Yea for us!!!

We'll upload some pictures of his arrival at home tomorrow.

We could not have made it this far without your prayers and support. Thank you, Thank you, Thank you so much. We love all of you.

Love,
Alan & Kristi

May 26th Update (Day 56)

Happy Birthday to Carter who is 8 weeks old today!

We've got him stable on oxygen and mostly on his feeds. We still can't come home with Arginine, a medicine for his kidneys but were working on it.

Carter has an echo scheduled for tomorrow as well as some blood tests and a test on his kidneys (something about being pH-balanced) which is what the Arginine helps to balance. We should know in the next day or so what the results are.

Carter also weighs 4.5 kilos and they finally said they want him to be 5.0 kilos to get ready for surgery so we're hopeful that his heart surgery comes sometime in June. We'll have to see.

If he does come home, we're trying to see if we can get a backpack and portable feeding pump and oxygen tank to make it easier to transport him. We also need to pass a CPR test at the hospital and also a car seat test.

So, 56 days and 2,520 miles later, we're closer as we've ever been and we'll see what this week brings.

Thanks for all of your thoughts, prayers, gift and support. It has truly helped us get through this difficult time managing two houses. The one we live in and room 3006 at PCMC.

Love,
Alan & Kristi

More pictures to come shortly...

May 24th - Ups and Downs

Carter had a aspiration moment this afternoon but he seemed to recover with some nurse intervention. They put him back on continuous feeds for now. We spent another 3 or 4 hours today up with him (after working in the yard all morning) and we're going to go back to 1 hour on and 1 hour off hopefully after the weekend.

Apparently, the nurses got word to bump his feeds to 75ml in 90 minutes and them no feeds for 90 minutes which didn't work. He had been getting 56ml in 60 minutes then nothing for 60 minutes.

We're looking to see if there is some formula with high calories that may digest a little quicker as it seems formula takes longer to digest than milk.

We're going to church up at PCMC tomorrow so we can visit grave sites in the afternoon.

Thank you for all your love and support.
Alan & Kristi

P.S. 19 children were discharged from the unit today. Just a handful of children remain in the 3rd floor and 4th floor areas of the unit.

May 23 - Update

Hello everyone,

Carter seems to be doing really well. They've steadied him on his oxygen and have changed his feeding to "bolus". He is fed 2 oz (about 56ml) in 60 minutes and then they unhook his feeding tube and wait an hour. After the hour rest, they feed him again the same amount over the next hour and then unhook him and wait an hour.

So he is fed 12 hours a day and isn't fed 12 hours a day but is getting the same volume as the continuous feed. Amazing!

Tonight he was awake all during "Flushed Away" that we watched together as a family, all 5 of us. Carter didn't seem to be too interested in the movie though. Everybody got a turn to talk to him, to play with him and watch the movie from time to time. Carter has three nurses with him tonight, the regular nurse, a student nurse and the tech. Of course they all love him.

We'll see what next week brings. He goes in for a echocardiogram on Tuesday to see how his heart holes are doing and we'll see where we go from there.

Thank you for all your prayer and support.

Love,
Alan & Kristi

May 20th - Day 50

Hello everyone,

Happy Birthday to Carter who turned 50 today...50 days that is! The nurses and docs are fixing his oxygen rate to a steady level and Kristi was able to place an NG tube in Carter to replace his NJ tube. So todays progress is that he is back to a NG tube under continuous feed (28ml/hr) and they fixed his oxygen at .1 liter(?) He seems more alert and has been awake for me the last two days (I haven't seen him awake for about a week until yesterday!)

Lastly, Carter has spent some time with some infectious disease specialists and they have determined that they believe his fevers are being caused by his medicines. They have had no specimens grow from his various blood and urine tests and even the spinal tap (lumbar puncture.) This is why they believe he is not sick despite his fever. They also stopped his antibiotics since he isn't sick.

More news to come later. Nothing new on the status of his heart. We are still waiting for him to get older (he seems to be doing this normally, usually a day older every 24 hours :) ) and to get heavier (still struggles with it.)

You may be interested to know that they weigh him in kilograms (he is 4.2 kg) so to convert, you multiply by 2.20462262. Therefore 4.2 x 2.20462262= 9.25 or 9 lbs 4 oz.

Thank you for your prayers and support.

Love,
Alan & Kristi

May 18 - Info on VSD

Hello,

Kristi found a website with lots of information about VSD's. While not all of it pertains to Carter, it does have very informative content on VSD and its correction and other issues. Some of the videos require RealPlayer from www.real.com.

The website is: http://www.ohsu.edu/heart/vsd.htm

Love,
Alan & Kristi

May 15th - The Care Conference Report

Hello everyone,

Yesterday (Thursday 5/14) we had a Care Conference with Carter's Attending Pediatrician, his Resident Pediatrician, his Cardiologist, his GI doc and a social worker. Never in our lives have we met with any doctor for 75 minutes let alone 4 docs and a LCSW but we did this time.

We talked about his current progress and talked about developing a long term plan. Carter is doing better each day despite occasional setbacks. The goal at this point is to try to stabilize his oxygen needs so that he can come home before his surgery. The cardio docs would feel better if Carter was bigger before surgery. He would do better in surgery and would have a quicker recovery if he were a little older and a little bigger. They mentioned they prefer a 3-6 month old infant unless Carter can't progress then that date would move up.

In order to try to get him to a point where he can come home, we collectively are working to achieve the following goals:

• Move his NJ feeding to a NG feeding and make sure he can tolerate the food in his tummy. For Carter, this is much easier to say than to do.
• Stabilize his oxygen so that adjustments don't need to be made at home as often as they are in the hospital.
• We did ask that if they choose to make a change, that we make one change and see how he does and they agreed.
• He must gain weight consistently despite the diuretics.
  

Heart Surgery:
The cardio docs don't want excess fluid around his heart and definitely not in the lungs. Carter is on four different diuretics to rid his body of excess fluid. They have also increased his feeds to 28 m/l per hour at 30 calories per ounce to give him the energy his body needs, and allow him to gain weight while on four diuretics. They are at or close to the max caloric intake a baby Carter's size can have so if he can't gain weight, that would be a setback and could move his surgery up.

When we called last night, (5/15) he still had an accumulation of fluid in his lungs that isn't going down so we'll see what happens on Monday.

In summary, the long range plans at this point are:

• Have Carter gain weight daily and have steady O2 needs so he can come home until surgery.
• Carter doesn't progress and heart surgery comes sooner rather than later. In this case, he likely won't come home before surgery.

Either way, we're probably 2-3 weeks at the earliest before Carter can come home and also about 2- months away if he doesn't progress and needs to stick around for heart surgery.

As has been the case, all this is subject to change without notice as Carter responds to the treatment.

We truly do appreciate all of your love, support and prayers.

Love,
Alan & Kristi

May 13th Update

Hello everyone,

I went up and met with his Attending Pediatrician today to see if we can get off the plateau we seem to be resting on. We have scheduled a "Care Conference" with his team (the Osborn Team) including the cardiologist, the Gastroenterologist and Social Worker. This will be held Thursday afternoon. We'll all collectively know more about Carter's future progress at this time.

Thy have increased his feeds to the maximum of 30 calories and 25 ml/hour to help him gain weight. They are maintaining the diuretics to keep fluid away from his heart and lungs. (Yes, these two items do compete against each other.)

He possibly has an infection which they will know the results of tomorrow and will treat accordingly. His O2 saturation level still varies when the heart shunts and they are working to keep that in line. Too much O2 and fluid builds up and not enough O2 other damage can occur. The cardiologist wants his O2 sats to be between 80-85%.

They are working on his electrolytes to compensate for the diuretics work (again a competing treatment.)

Each Wednesday, the cardiology team meets to discuss the coming week heart patients schedule. They usually operate on the children they discuss each Wednesday. We should know shortly what the cardiology team is looking for in order to have a successful surgery for Carter. We know it is a matter of when and not if. To us, it seems that sooner is better than later since the heart surgery would fix many of the problems Carter is facing. However, later is better from a success standpoint so it is a balancing act.

We obviously want a successful outcome and want Carter to come home. Sadly, to get him home may require several more weeks of him at Primary Children's Medical Center. If we can stabilize him enough, maybe we can bring him home until they are ready to operate which would be the best of both worlds.

We're holding up good and visit Carter each day. Since they raised his O2 levels, he is more alert and attentive when awake but he still tires easily and sleeps a lot.

We should know more Thursday and will post something that evening or Friday morning.

Thank you for your love, support and prayers.

Love,
Alan & Kristi

May 12 Update (day 42)

Hello everyone,

Carter is doing somewhat better. He has these "fluke" fevers (one of his regular "cares" the nurses provides throughout the day includes temperature taking) where his temperature spikes above 38.0' Celsius. (about 100 degrees). He has had this three times over that last few days. Monday morning, they took blood and urine samples as well as spinal fluid to rule out an infection and meningitis.

We are working with his PCMC pediatrician to schedule a consultation with us, the pediatrician, the cardiologists and thorasic surgeons and social worker to develop a long range plan in preparation for his heart surgery and recovery. The cardiologists and the surgeons meet each Wednesday to discuss patients. We were hopeful that Carter would be at the top of their list this Wednesday but one told us they will postpone him to next Wednesday because of his fevers. Our concern has been the fever and samples have not shown any infection which we why we believe they are "fluke" fevers. We're meeting the pediatrician today to see if we can schedule this consultation for this Wednesday with the docs.

It seems to us and a few of his doctors that the holes in his heart are the cause of his liver, sulfates, breathing, and occasional lack of alertness. We'd like to address this sooner rather than later. The closer he gets to his 2-month birthday, the harder it will become for his heart to keep up with his needs.

We appreciate all of your prayers, thoughts and support.

Love,
Alan & Kristi

May 10 Carter Moves

Hello everyone,

Needless to say, the last few days have been pretty much downhill from where our thoughts were on Monday and Tuesday. We spent from 4:00 until 11:00 at PCMC today. Everyone had a turn to hold Carter though he chose to sleep through most of it. We talked with Dr. Hewes (pronounced Hughes) who is Carter's pediatrician at PCMC to go over some details. Carter did have a fever yesterday morning but they are watching him carefully. If newborns get fevers within the first 2 months, they draw blood and urine samples and also a lumbar puncture (spinal tap) to make sure of the bacteria or virus and provide provide proper treatment. The spinal tap occurs because the blood/brain barrier isn't fully developed until 2 months of age meaning blood borne illnesses can cross into the brain and cause damage. It appears the fever isn't anything but him being warmly wrapped or in a warmer room. If he has another fever, a spinal tap will occur.

He is still losing weight (he is back to 8 lbs 6 oz today and his birth weight 6 weeks ago was 8 lbs 0 oz. He has ranged from 7 lbs something to 9 lbs 2 oz in his stay. The goal is getting him to gain weight and keep the fluid out of the lungs. If they feed him too much, he gets fluid in the lungs. They give a diuretic to get the fluid out and he loses weight. They are looking for a good mix. The heart issue is the underlying factor. If the heart could work efficiently, it would be easier to do things you'd expect with a baby. The docs went to a 50-50 mix of milk and formula and are giving him the maximum calories they can per ounce so the diuretic can do what is needs to do to help the heart and Carter can hopefully gain weight. They can give him up to 10cc more per hour in feeds and then they are at maximum feeding capacity for someone his size. If he can't gain weight at that point, he'll need his heart surgery sooner rather than later.

His bilirubin climbed again this week but is not too high. The GI doc felt that the heart issue is not letting the blood clean out the liver like it should so his bilirubin will rise and fall with how well the heart is working. Carter has gone back to a NJ tube with continuous feeds and that is likely where we will remain until heart surgery time. I don't see any change with his feeds in the foreseeable future.

If he can gain weight with what was mentioned above with feeds, they'll let him come home and we'll have him on O2 and continuous feeds until we return for his heart surgery. He is being prescribed several diuretics, vitamins, heart conditioning medicine, and others to keep reflux down, and bowels movin'.

The cardiologist would prefer him to be at least 2 months old before scheduling heart surgery so we're probably in a 2 to 6 week window. They would really like him to be 10 lbs but they have successfully performed this surgery on kids smaller than Carter. Therefore, I expect his heart surgery to occur between Memorial Day and July 4th. In summary, if he cannot gain weight under maximum caloric feeds, heart surgery is the only way for him to come home.

Thanks for your continued prayers and support. Carter will be 6 weeks old on Monday. Happy Mother's Day to all...

Love,
Alan & Kristi

Carter's blog: http://andersons6175.blogspot.com/

Carter's PCMC page: http://www.carepages.com/ServeCarePage?cpn=CarterJAnderson&ipc=pinviteemailtemplate

May 7 Setback

Hello everyone,

Ok...Carter had a setback today so he won't be coming home on Friday. He threw up a couple times and let some of the liquid go into his lungs. They were going to go back to a NJ tube but Kristi asked if he could keep his NG tube. The pediatrician agreed but the new resident disagreed. Carter still has his NG tube for now but if he has another episode, they will likely put in a NJ tube. Here is a brief rundown.

• The holes in his heart "shunt" blood to the other chamber.
  
• His oxygen saturation levels >90% cause more blood to shunt than below 90% due to more oxygen in the blood
  
• at 100mG of oxygen, he over saturates (see bullet #2)
• at 75mG of oxygen, he under saturates (goes below 80%) (these are the two settings, there are no in-between ones)
  
• His oxygen levels >90% cause the heart to pump more, keeping the heart larger and placing excess fluid in the lungs among other things.
  
• They give him diuretics to get rid of the fluid in the lungs. They have since increased his dosage to get rid of more fluid.
• They give him heart medicine to slow, strengthen and stabilize the heart.
  
• They would rather have him be oversaturated on oxygen than undersaturated.
• They want him to gain weight
• The diuretics get rid of fluid and make him lose weight.
  
• Go to top and repeat.

They won't have the results of todays medicine changes until Monday so we're there for another few days. We may attend the PCMC LDS Branch that meets on the 3rd floor each Sunday at 10:30 a.m. for a 30 minute service.

Thank you for your continued love and support, while today's events were disappointing, we know we are getting closer.

Love,
Alan & Kristi

Carter's blog: http://andersons6175.blogspot.com/

Carter's PCMC page: http://www.carepages.com/ServeCarePage?cpn=CarterJAnderson&ipc=pinviteemailtemplate

May 6 Coming Home Post

Hello everyone,

Well...we think we are there! If all goes according to plan, Carter should come home on Friday, May 9th! 39 days at Primary Children's Hospital and more than 1,750 miles in traveling as we visited each day. // Beverly Hills, CA to Milwaukee, WI //

Kristi is spending all day at the hospital to teach Carter how to eat from a bottle and to nurse. She is spending the night at the hospital tonight so she can get accustomed to his sleeping patterns in the wee hours of the morning.

We need to still have a hearing test, a car seat test, learn to place a NG tube, how to mix his milk 4:1 with a calorie supplement, how to properly administer his medicine, revisit proper CPR techniques, learn how to operate the feeding pump, and change out oxygen canulas. They will wait on the heart surgery until he has doubled his weight (approx. 16-18 lbs.) (maybe later this summer?)

If he comes home Friday, our first visit to his pediatrician should be on Monday.

Life is good and going to get better....

Thank you for your prayers, love and support. They have truly helped us and Carter get to this point.

Love,
Alan & Kristi

Carter's blog: http://andersons6175.blogspot.com/

Carter's PCMC page: http://www.carepages.com/ServeCarePage?cpn=CarterJAnder

May 5 Good News

Hello everyone,

GREAT NEWS! Carter passed his swallow test! Kristi is at the hospital and it looks like they will try feeding Carter with a bottle and try nursing later in the week! You don't know how huge this step is!!! More to come later tonight...

Love you all,
Alan & Kristi


Carter's blog: http://andersons6175.blogspot.com/

Carter's PCMC page: http://www.carepages.com/ServeCarePage?cpn=CarterJAnderson&ipc=pinviteemailtemplate

April 30 Post

Hello everyone,

First, his liver seems to be back in gear and he has good color again. The Physical Therapists (PTs) are working with him 2-3 days a week and a speech therapist is working on his mouth function. His oxygen is barely a whiff of about 100 micrograms (instead of 2 or 3 liters) and he is holding his own oxygen levels. There is a lot more to this story that would take a e-mail book to describe but we are where we are.

Secondly, I was able to visit with the cardiologist today and here is where we are at. The holes in Carter's heart are no longer closing and his ventricular septal defect (VSD) is large enough that it won't be able to be closed with a catheter. The VSD is one of the most common heart defects in newborns. The docs are working on having him gain weight, giving him medicine to "strengthen, stabilize and slow" the heart down and increase his diuretic. The diuretic (Lasix) has a side effect that deals with the kidneys so they are giving another medicine to balance the kidney function. Once he gains more weight, gets excess fluids out of his system then we will take the next step.

In about 4-6 weeks from now (early to mid-June?), Carter will have heart surgery to close the two holes (VSD and ASD) and also close the PDA value which has also stopped closing. This procedure will be very similar to Grandma and Grandpa Anderson's heart bypass surgery.

Within two to three years, they will also remove his tonsils and adenoids to give a little more space to his airway.

We continue to work on breathing by taking some stress of the heart and sometime in the next week or so, we'll try feeding again with the NG tube. They will release him to come home with an NG tube but not an NJ tube. I think how he will be fed at home is what is keeping him from coming home at this point. As in can he keep it in his tummy? How is his reflux and aspiration?

Info Site:
http://en.wikipedia.org/wiki/Ventricular_septal_defect

Thank you for all of your love and support. The days seem to be long and run together, the trips long but being able to hold Carter and have the kids see him and hold him is wonderful. Yesterday, Carter was with PT and both Parker and Ashleigh got on the floor mat with Carter and the PT and both played and cooed with him. It was a neat moment. Carter will get TONS of attention when he finally comes home.

Love,
Alan & Kristi